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Children with disorders of the brain can have fulfilling lives along with risk for problems that impact health and quality of life. This book offers guidance when navigating complex and emotionally hard circumstances, with an emphasis on improving a child's outcome when possible and achieving improved symptom treatment always.
About the author
Julie Hauer is faculty at Boston Children's Hospital. She has 27+ years of expertise in the care of children with severe neurological impairment, focused on those who have co-morbidities that impact health and quality of life, resulting in complex medical care and decision-making. Her work is focused on the intersection between complex care and palliative care, including development of assessment tools and communication strategies with parents. Innovative work includes chronic neuro-pain screening that guides mechanism specific treatment, care plans that distinguish Acute, Bridge, Chronic, and Direction phases of care, and differentiating features between feeding intolerance versus intestinal failure at end-of-life.
Summary
Children with disorders of the brain can have fulfilling lives along with risk for problems that impact health and quality of life. This book offers guidance when navigating complex and emotionally hard circumstances, with an emphasis on improving a child's outcome when possible and achieving improved symptom treatment always.
